Saturday, June 24, 2006

An article written by me for the US Dept of HHS in March 2006

Everyone often talks about the physical impact of MS, but the emotional impact can be just as overwhelming. I had just finished graduate school. I was developing my career and coming to grips with the student loans, car payments, credit cards, and mortgages. Then there were the social pressures typical of a young 30ish single female. You know, people asking when are you going to get married and have children. Now, add the diagnoses of MS with the idea of possible cognitive deficits, and I started thinking things like, "will I have the ability to work?" "How will I pay my bills?" And "Will I have long-term physical problems?" It was quite devastating!
I was diagnosed with MS on New Year's Eve after spending two months wondering what was wrong with me. The three-inch heels that I proudly struted around in were now replaced with mules because my legs and feet were in so much pain. That was my first sign — it was sudden and scared me to death. I was at work and first thought that the new pair of heels was too high. My friends teased me, claiming it was just a matter of time that my heels would feel better, but the pain didn't go away — the next day or the day after that. I knew something was wrong. I could barely walk.
To know me is to hear me that is, the klackety klack of my heels as I walk down the hall. I' am one of those small women who walk really hard and with a whole lot of attitude. As an African-American woman, you learn at a young age that your walk defines you. From my colleagues in the office, to my neighbors in my building, ask anyone who knows me, and they will tell you, "I knew that was you because of your walk." With MS, that distinction was threatened.
MS is a disease of the brain and spinal cord (central nervous system). Protective insulation, known as myelin that surrounds the nerves, known as axons, are damaged or destroyed as well as the nerves themselves. As a result, messages from the brain and spinal cord are reduced or lost and changes in body functions occurs. For example, impaired mobility, cognitive changes, numbness, weakness, fatigue, visual disorders, and chronic pain can occur.
There are stages of MS, such relapsing-remitting (the kind I have) which is the most common form. During this stage, there are often few acute attacks or relapses. After these relapses, sometimes you stabilize, bringing you back to "normal." But, you might be left with some disability. For me, it took some time to regain most of the strength in my legs. I bought a pair of sneakers, took up Pilates, started a healthy diet, and didn't give up.
I had so many questions and felt it was important to talk to others like me. After going to conferences, support groups, and doctor's appointments, I met a lot of people who were instrumental in my healing but I didn't see too many young African-American females. Especially in books and literature on MS, there weren't many that dealt with African-Americans living with MS. I felt so alone. Knowing what I was going through, a friend gave me an article featured in Essence magazine at the end of the year in 2002.
This article gave me so much hope. I wanted to meet others. I searched everywhere, even online. When I did come across someone like me, it was like WOW! Such a shock and comfort to know that there are others. I quickly learned through personal observation and conversation that this was not uncommon. Immediately, after introductions, conversations would explode about what appeared to be the obvious, like how there are fewer African-Americans with MS than Caucasian-Americans. I also noticed other things, like weak limbs more frequently reported among African-Americans. I learned about a study that suggests that the course of MS may be more aggressive among African-Americans than others. However, the reason why remains a mystery just as it is unclear as to what is the exact cause of MS; more studies must be done to understand causes and for a cure.
Keep in mind, there are many who suffer with the symptoms and go years before getting an actual diagnosis and treatment that could contribute to the aggressive course. With this in mind, I felt it was extremely important to reach out and educate others about MS because an early diagnosis plays an important role when dealing with this disease.
It's important to seek support through family and friends. Being at conferences, support groups, and doctor's appointments offers plenty of support too. Not only to yourself, but also to that stranger that may be sitting next to you. Believe me, I know because I was that stranger. I went to every conference and support group in my area, but sat in the back and didn't say a word. All I did was cry, listen, and look around. One day at a conference, while I was in the midst of breaking down again, a young, vivacious, beautiful woman sat next to me, tapped my leg and said it was going to be all right. Looking at her and speaking with her, I realized that we had so much more than MS in common. We had the same fears, hopes, and desires -- but it was her ability to face her struggles and hardships with such confidence and strength that made me realize that it was going to be all right. I've learned that it's common for people with diseases such as MS to experience feelings of fear, confusion, loss of control, anger, and grief at one time or another. After all, MS can be life altering.
In my experience, African-American women often refuse to seek help from a counselor, therapist or even a support group. Many women think that between working and raising a family, there is no time. Others believe that seeking help from a counselor, therapist, or even a support group is a sign of weakness. The idea of telling someone else your business has prevented many from seeking help. Don't let that be your excuse! You are not alone. There are many others going through similar feelings and emotions. Speak to your doctor or contact the MS Society who can refer you to support groups or activities that can introduce you to others or professionals who can help you.
You have to believe that although you may have MS, MS doesn't have to consume you. Your state of mind is crucial when living with MS. Your mindset establishes your expectations. The better you feel about yourself, the better you will feel and do. Expectation causes preparation and governs your behavior. When your expectations are low, you feel defeated. You may not go to the doctor or continue treatment. Have high expectations! Preparation produces confidence! The more you know, the more you are in control of your illness.
Today, I have more good days than bad. With the support of my family and friends, I'm developing the new me! I continue to participate in a support group where I've met some beautiful people who lift my spirits and convince me that there is life after MS (I even bought a new pair of low heels and some cute flats). As I look back, I realize now that my first year was indeed a new year. A year filled with new goals, new expectations, new hopes, new friends, and most importantly, new beginnings. So as I embark upon the upcoming years, kicking my new "flats" to the latest song, I know this is truly a happy new year.

an intro to me

I was diagnosed on New Year's Eve 2002. There was no booty dancing that year, just me in constant thought of what this year was bringing. My legs and feet were in so much pain. It was that feeling you get when your foot falls asleep, the numbness and pins and needles feeling. That was my first sign and it was sudden and scared me to death. I was at work and first thought that the new pair of heels that I had on was too high. My friends teased me claiming it was just a matter a time that my heels would catch up to me; but the pain didn't go away the next day or the day after that; it was everyday, constantly for weeks. I knew something was wrong since I could barely walk.

Once I had a dx I was lucky to have found a great specialist. I remember telling her my name is MS Johnson, the “MS” means this is a marriage and I would like to meet my husband’s family which includes the doctors, nurses, tech’s, office manager even the receptionist; for me, it’s important to know who is in your medical support circle. So after a couple of visits, then there was the ultimate fear - the fear of the options…Needles!!! I knew immediately the fewer the better, so Avonex once a week on Mondays worked for me. The idea of needles for the rest of my life mortified me. I got my friends and family to assist but some were just as scared as me – one friend nearly fainted when she saw the needle - and the others were a bit too anxious; another friend eagerly stabbed the practice orange with a smile on her face. Mondays would never be the same; I hated it!!! I cried just at the thought of the needle, let alone to see it, but my doctor was very patient and supportive with me. We spent many months talking (what happens if I miss a week), crying (will it hurt), bargaining and negotiating (If you do it, I promise I’ll do it next week) until finally I was ready to do it myself.
When the doctor said MS; All I knew about MS was Montel Williams and Richard Pryor had it. So I had to investigate. I went on-line and came across many websites like the MS society and started talking to people on-line people. I also started going to support groups and conferences but in no way did I feel alright about having MS. I felt ugly, mad, and scared. I remember attending a conference downtown. It was a bad day my left leg and arm was dragging, I just ordered my first cane. I sat in the back, crying. Just then a woman sitting a couple seats away said in a gentle whisper it’s going to be alright and then smiled. For the first time I believed it . We sat together and talked about our journey with MS and later exchanged numbers. Today we get together often to talk and laugh about our now positive outlook on life which is a big change from when we first met.
What I discovered my first year was that help is out there, You are not alone; support is the key. MS is unique for each person and sometimes it may take time to define the regimen that works for you. You and your doctor or nurse must work together; it’s more than just taking medication; the lines of communication must be open in order to effectively manage MS. You must talk to someone, friends, family, co-workers or even that stranger at group/conference or in the doctor’s office. For me I find great joy and therapy in talking with others at groups, conferences, walks, on-line and the doctor’s office. Support is often two way. It doesn’t matter who you are or what you do, we are ALL in this together.